Goals Based Decision Making

We face decisions every day;  minute things, like which cereal to eat in the morning, to the extremely complex, like is it time to encourage our parents to move into an assisted living facility? Depending on the ramifications of our choices, the amount of stress these decisions carry certainly varies.

One way to reduce angst associated with decision making is to step back and use a technique called goals based decision making. This term has become associated with hospice and palliative medicine because it runs countercultural to the way modern medicine tends to make decisions.

The idea is simple; instead of focusing on the immediate crisis, think ahead to what the objective is. We actually do this all the time.  Do we have a lot of activities today and our goal is to have energy? Then we choose a breakfast with more protein than simple sugars.  Are we meeting a new client that we hope to sign a contract with at work? Then we choose our more professional vs. casual clothes.  Those choices all involve a quick determination of goals. 

We do this for big decisions as well. When we decide where we’ll rent or buy a house, we don’t just consider the immediate crisis of needing a place to live, we think of the future and the purpose of this living structure. Does it need a certain number of bedrooms? Is the location important? How much work do we want to put into fixing it up? All of these are questions about where we’re headed.

It seems so simple, and yet when we enter the complex world of healthcare things change.  A specialist says you need to be on a medicine for your heart, because your numbers are high. Unfortunately this medicine also causes you to be in the bathroom 10x every morning, so you avoid leaving your house and are now napping more in the afternoons.  No one thought to ask about the goals. Is it more important to you to have those good numbers for your heart? Or is your goal to have energy and be out interacting with your community?  In medicine the default is to fix the problem, not to find out what you’re hoping for.

The issue with only focusing on the disease is the narrowness of that vision.  When I meet patients who are on 30 different medicines, with timers and schedules, pill boxes and post-it notes, I find they are lost in the regimen.  Life has become about managing the pills, which in turn makes the numbers look good.  These patients don’t say to me, “My goal in life is to have the best blood pressure and best cholesterol of anyone I know.”   Usually their goal is living life with quality, meaning and minimal burden. 

When you have goals the decisions become easy. If the most important thing for you is to live independently, and you are diagnosed with something that makes that goal impossible, then the choices about medications and procedures that would place you in a nursing home should be denied.  Unfortunately it’s up to you to speak out. The healthcare system is designed to fix diseases and avoid death, period. As to where you’re headed, that’s up to you. 

The Truth about CPR

I’m sure you’ve seen it on a medical television show; a person in the emergency room loses consciousness, and a swarm of nurses and doctors rush around yelling “Code Blue”. Someone pushes on the person’s chest, oxygen and medicine are administered, and in minutes that person is back awake, apparently fine.

I honestly think this scenario is what people think about when they hear the word CPR, which stands for cardiopulmonary resuscitation. Unfortunately this image is skewed.

Originally known as closed chest massage, the technique was first described by surgeons in the 1950’s and used exclusively for patients whose heart stopped during surgery.  Later resuscitation breathing was added and in 1963 the term CPR was adopted.  

Over the last 50 years we have recorded data on how good CPR is at restoring blood flow, and more importantly in allowing an individual to keep living. It is interesting to note, that despite all of the medical advances over the last half century, the actual rates of survival from CPR have not changed. 

The number we care about most is how many people are able to leave the hospital alive after needing CPR.  That number remains at about 15%.  In other words less than 2 people of every 10 that undergo CPR will leave the hospital alive. 

I find this more troubling: If you are already in the hospital for a different reason, and your heart stops, but it is not witnessed when it happens, then the chances of you leaving the hospital alive are only 1%.  In fact, one study showed that if CPR was attempted on someone with a terminal illness in the hospital, that 0% survived the effort.

Why am I listing such negative statistics? In attempts to give accurate information on an intervention that most of us assume is always lifesaving. CPR does save some people, especially if they are healthy and have an unexpected heart attack or arrhythmia.  However, in people with cancer, or who are already seriously ill, CPR is often not helpful. In fact, CPR in those situations can be harmful, in that the procedure itself can break ribs, cause pain and be traumatic for families to witness.

This decision on whether to do CPR or not is known as someone’s code status. Perhaps you’ve heard the terms full code or DNR (Do not resuscitate), these phrases are the declaration of what someone wishes for themselves when they enter a medical facility.  These terms are something you should consider telling people around you, so that they can speak up for you, when you cannot.

Another way to look at the code status discussion is to think of it as a question on how you want to die.  Since the chance, when already ill, of surviving CPR is almost nil, the question is, when my heart stops do I want to die naturally, focusing on comfort with family hovering, or do I want to die in chaos, focusing on chemicals and numbers, with a medical team hovering?

Consider this in closing. I’ve never met a family who has wished their loved one could have had CPR as they died, but I’ve had many families lament with regret that CPR was performed. 

Mystery of the Timing of Death

As physicians, we are trained to be comfortable with things that are predictable. If your blood pressure is elevated, we bring it down. If you have an infection, we give you a medicine to eradicate the infection.  Unfortunately, not many things in medicine are quite so simple.  Of all the unpredictable processes our bodies go through, the hardest to predict seems to be the timing of our birth and the timing of our death.

This is not a column on obstetrics, so I won’t discuss birth, but the parallels to dying cannot be avoided. Mother’s agonize their last weeks of pregnancy, and family members plead with the physician for clues on when the baby will be born.  The truth is, no physician can predict when labor will begin. The same is true with dying. The final days and weeks can be agonizing as families anticipate and plead for predictions on when the event might occur.

This mysterious time for some rushes by in just a day or two and for others lingers for weeks. Do we have any control over the timing? Based on my own experience watching hundreds of patients go through this, I think that we may.  

The things that prolong dying are intuitive; that person isn’t ready to die. This refusal may be for many reasons. They may be fearful of the process itself, or what may or may not come after death. If someone is afraid to die, their spirit will fight it and what should take days, takes weeks instead.

Sometimes prolonged dying occurs because there is unfinished business that needs done. That business may be as simple as waiting for wheat to be harvested, as and elderly patient of mine did, or complex, like Mrs. O who waited to offer forgiveness to her son who was escorted in shackles from prison to her bedside before her death. Sometimes we don’t even know what unresolved business is prolonging the dying, but it’s a reason that person refuses to go.

People with a very new diagnosis or short prognosis are another group that tends to have a prolonged death.  They haven’t had time to wrap their mind around their disease, thus a part of them refuses to give into death, prolonging the process.

Finally, mothers, especially young mothers often refuse to die. Their inner drive to exist has shown me some of the most prolonged deaths. If anyone doubts that we have some control in the timing of this, I’d point you to a myriad of stories of moms with cancer, like E. who lay in a semi conscious state for over a month with nothing to eat or drink, withholding death by sheer will alone.

It is for these very reasons, that hospice refuses to interfere with the timing of death by using medications to hasten the process. It may seem contrary, but we must respect our patient’s wills, even if it is their own will that is prolonging their death. 

Whether you believe we have a choice or not in the timing of our death, the most predictable truth is that the timing of death is the ultimate unpredictable process. 

Volunteerism in Hospice

We’ve all seen it happen.  A crisis occurs, or a need is known and individuals get together donating time and money and more quickly than any program could be established the need is met or problem is solved.  Committed volunteers have the ability to make incredible change.

Many don’t realize that it was volunteers who actually started the hospice movement we know today.  In the 1970’s when the first organized hospices formed, there was no compensation within insurance companies for those services.  For over a decade it was simply nurses, doctors, counselors, therapists and community members, etc who volunteered their time to care for dying patients and grieving families.

When the government decided to officially make hospice a part of the Medicare benefit in 1982, they didn’t want to take away the origins of volunteerism.  To remedy this, Medicare mandated that 5% of all patient care hours provided by paid staff, must be volunteer hours.  Simply put, for a 40 hour work week with 10 employees, the hospice must provide 20 hours a week of strictly volunteer time.

This mandate has essentially become one of the defining differences of hospice care. In communities like ours, it allows for a sense of ownership, as neighbors and church groups, businesses and organizations donate time to serve each other.

Hospice really couldn’t survive without volunteers.  Those required hours are filled with administration duties, visits in patient’s homes, running errands, baking cookies and playing the guitar.  It is the volunteers who serve as our creative wish fulfillers.  I was recently with a patient dying of cancer who had wanted to finish a quilt for her children, however her strength was ebbing and I felt she would run out of time.  With her permission, word was sent to our cadre of volunteers.  Within a day we had set up a quilting bee at the hospice house, where she, her family and our volunteers all worked to finish the quilt.

There are no age limits for volunteers. I’ve known high school students who’ve donated time as a requirement for school, and been so transformed by their service that even once in college, they came back in the summers just to stay involved.

It is no secret that our culture avoids death.  The avoidance can actually lead to a fear dying.  Some volunteers give their time, simply to learn more about death. Having a chance to see first hand how hospice supports the patient physically, psychologically and spiritually becomes a relief and anxieties are abated.

The most effective use of volunteers is when an organization can match the skills and gifts of those donating their time to the needs of the organization itself.  Because hospice care is essentially focused on helping people live life to its fullest, the needs are as broad and unique as humans themselves. I’ve never known a volunteer in hospice that we couldn’t use in some way. 

Volunteerism in hospice is a perfect blend; Volunteers would tell you that by helping people in such a vulnerable time of life, their own lives are changed, and frankly, we wouldn’t exist without our volunteers. 

Benefits of Bereavement

Bereavement is an unusual word. It’s not thrown around in daily conversation as much as the words grief and mourn are. This has a lot to do with the meaning of the word, which refers to the loss or deprivation of something or someone, but especially the loss of someone by death.

Notice that the definition doesn't say much about emotion or feelings. To be bereaved is literally the fact that the loss occurred. The emotions associated with the loss are those more familiar words like grief, anguish, distress, etc.

Bereavement is unavoidable after a loved one dies, because it simply acknowledges the situation. That does not mean, however, that all bereavement looks alike. In fact I think no two bereavements are exactly the same.

When Mrs. S lost her husband in his 50’s, she had just sent her youngest daughter to college and was now utterly alone. At the suggestion of a bereavement specialist, instead of going inward, she began taking dance, art, and design classes to keep her mind busy. In her grief she found a new niche as an interior designer, helping other people with loss transform their homes and heal. 

Mr. C had been married 60 years when his spouse died. He didn’t have the energy for anything new. He lost weight and became withdrawn. It appeared on the outside that he was willing himself to follow his beloved wife. Bereavement counseling started and Mr. C was able to see through the fog of his enormous loss to the children and grandchildren that still wanted to enjoy him for his remaining years.

When we talk about hospice, one of the treasures people forget about is bereavement support. For at least a year and often longer, hospice provides a specialist in bereavement to help families cope with the loss. This means someone from the outside is able to notice subtle red flags of complicated grief and can help get things turned around.

Sometimes, as for Mr. W whose death was peaceful at the age of 83, bereavement support was needed for a grandson who required help processing his first experience with death. Mr. W’s grandson later admitted, without the support from hospice, he would have relapsed into a drug addiction that he’d recently quit.

While it is true that death in the hospital and death at home without hospice can be peaceful and symptom free, it is also true that without hospice, there is no chance for bereavement support or follow up. Of course, families and church communities are often pivotal in supporting each other in times of loss, but bereavement support from hospice is that extra net, making sure no one falls through the cracks. Best of all, like all other hospice services, it doesn’t cost anything. By simply being on hospice, the entire family is entitled to bereavement support.

For some, this is the only reason that they considered hospice. They didn’t need hospice for medications, or home visits, however they worried about their loved ones, and wanted assurance the family would be supported after their death.

Decision Making at the End of Life

A unique thing about our medical system is the value we place on autonomy.  This is in contrast to the old system of paternalism which meant doctors made decisions based solely on their idea of what was best for patients.  The pendulum has swung, and now patients are considered to have the final say.

The idea of autonomy is extremely crucial in end of life decisions. This next story should illustrate that.

I took care of patient during my medical training that was on a ventilator in the intensive care unit. The elderly patient had a traumatic brain injury and was unconscious and stuck on the breathing machine.  Our team turned to the family for guidance on how to proceed.  The choices were to either remove the breathing tube or place a permanent tube into his neck so the ventilator machine would keep him alive, though unconscious, for the rest of his life.  Like most, the patient hadn’t talked to his family about his wishes in this situation.  The family was torn, passionately arguing both options. We had to respect autonomy and couldn’t make the decision for them. The family finally decided to put it to a vote. My patient’s life or death was left to a tally from folded scraps of paper with scribbled yes’s and no’s.

To prevent this from happening to you, there are a couple options to consider. The first is an advance directive, otherwise known as a living will. Think of this as a preemptive decision. Usually living wills are a list of things you don’t want to happen to you if a certain thing occurs.  For example, “If at any time I should have a terminal disease it is my desire that my dying not be prolonged by artificial nutrition.” These forms are sometimes in written paragraphs, and other times a check list of things wanted or not wanted. In Kansas this paper must be signed and dated by two unrelated witnesses.

There are criticisms of advance directives; the language at times is too narrow, so only in a very specific situation is the document honored. Location can also be a problem; often it is lost or locked up, so no one can find it to honor the previously made decisions.

The other option in decision making is choosing a surrogate. This is known as a DPOA or durable power of attorney. Choosing a surrogate places the responsibility on them if you are unable to communicate for yourself.  The hope is that you’ve either communicated your wishes with the surrogate, or they know you so well that you trust them to make good decisions for you when you cannot. Some people choose multiple DPOAs. There is no limit; however keep in mind that conflict can arise if the DPOAs have different opinions on your wishes.

If none of these are available, we will still seek family’s input if you cannot speak for yourself. The greatest gift then, is talking about your wishes with someone. That’s actually a good way to start, “You know when I am at the end, I wish…” Otherwise it may just be put to a vote.